worried wife

I've never posted on any site, but I've been reading all of your helpful messages for a few months.

My husband was diagnosed with prostate cancer in September. He has Gleason 9, with metastasis to his bones. He is in his mid-60's. Right at this moment I have my coat at the ready in case he has to get catheterized at the hospital. Usually he is urinating frequently at night, but a few times he has had trouble urinating. Other than that, the treatments/tests are worse than the disease, so far. Although today is the worst with the barely urinating situation.

Ironically the one time he was catheterized was after having the ct scan, because he had to drink the liter of fluid. That was a hallucinatory few days. The biopsy, bone scan, ct scan, catheterized, two weeks later having the catheter removed, and only missing one day of work. We joke that he is an ironman.

He is on lupron after having had a few months of degarelix. The idea is that he would be able to only get treatment every three months. But I think that he will go back on the degarelix, because things seemed better when he was getting that. The good news is that he wasn't having site problems from the injection in his abdomen. I have been there for nearly every appointment, including the injections and the removal of the catheter. I stayed in the waiting room when he was catheterized.

He is sweating of course, and is often up and down at night having to urinate or trying to urinate. He is very pragmatic, and is trying to remain as normal as possible. Me too. But it isn't easy. My family is already under a lot of strain for non-cancer reasons. They know about the cancer, but I don't want to get into telling them every setback, especially since I think that this is only the beginning. I joke with my husband that I need to Man Up. And I try.

Sorry this is a bit long. Any thoughts from men about what is helpful? Do you keep a lot of notes. I feel already that it's hard to keep track of the process. Fortunately we have good insurance, and many doctor choices. Thanks for reading this.

Hi eliz,
I'm so sorry to hear about your ordeal. Usually the hormone therapy eventually shrinks the prostate and allows better urine flow, but it can take some time. Sometimes men get a TURP, which reams out the urethra.

From what I've read, Firmagon often works better than Lupron, but everyone reacts to some medications better than others, so all you can do is try it and see what works. Unless you take Casodex first, you get a testosterone surge when you first start taking Lupron (this doesn't happen with Firmagon), and the surge makes things worse before they get better. Is it keeping his testosterone and PSA down? You didn't mention any other meds he is taking -- Casodex (bicalutamide)? Avodart? Besides slowing the cancer, they also contribute to prostate shrinkage.

Is he taking Zometa or Xgeva to treat and prevent more bone mets?

One of the best and least invasive measures he can take for the hot flashes (sweating) is acupuncture. It seems to control the thermoregulatory response in the brain, and I'm told that one can be taught to do it. I understand it's done on the ear.

Thanks for your fast reply, Allen. Unfortunately, had to grab my coat and accompany my husband to the hospital. He did have to get catheterized. My husband has had talks today with the urologist (who called twice on a Saturday), who says he will take catheter out Monday, and will give him something to help. Extra oncology appointment too next week. Both doctors respond to emails by calling us really promptly at home, whether it is weekday or weekend. Seems amazing.

He started out with firmagon, which seemed great, and was told by the oncologist that probably soon there would be a bisphosphonate to help with bone problems. He wasn't given casodex in the switch to lupron - I guess the idea was that the firmagon would drop his PSA, and he wouldn't need the casodex. He had PSA 7 in April 2012 (when we thought that he probably had BPH), PSA 15 in September 2012 (when he had the biopsy, all samples positive with gleason 4+5 or 5+4, and bone involvement, but not lymph node).

With the firmagon his PSA dropped to .8, then .7; however with the lupron, his PSA went up to 1.5, far lower than 15, but higher than a month ago. I don't know the testosterone levels. Both doctors say that PSA and other measurements are not very precise. Oncologist has some patients with sky high PSA who are doing watchful waiting. Thought that might be interesting to some readers of this board, who may be agonizing over treatment choices.

Thanks for the suggestion about accupuncture for sweats. I read your post to my husband, who says that he can stand the sweating. He was surprised that there was such a fast reply to my post. I said that this message board was really good. People are really interesting. Thanks again for your fast reply. And good luck for your situation. Eliz